Monday, December 10, 2007

Still Waiting

As is so often the case here at Children's Memorial, when somebody says something is going to happen at 9am, you can bet it probably won't get off the ground till noon. Because the cardio-vascular team is working on a case in the operating room this morning, we're now told the weaning off ECMO won't start till "mid-day". So we continue to wait here by Evie's side. She's doing alright. Her blood cultures to determine if she has contracted an infection are still inconclusive, but it often can take closer to 48 hours to determine if one has a minor infection or not (an aggressive infection would likely be showing clear signs by now.) Still, huge odds mount against Evie. Depending on how things go its possible we won't have any news until tomorrow.

37 comments:

We don't know each other but a woman (whom you recently met via phone) on my online support group shared your story with us. Would just like to send some positive thoughts and energy to little Evie in her time of need. I wish you all the very best.

I'm so sorry that you are having to go through all of this. Sometimes waiting is worse than just knowing the outcome - no matter what it is.

We continue to pray for Evie and for you two. Maybe this little extra time is what she needs to strengthen herself for coming off the machine. We have to trust that there is a plan...we just don't know what it is.

Know that we love you guys and are there with you in spirit. We are thinking of you constantly (if you couldn't tell by the site tracker that probably shows my obsessive checking of the site).

Matt and NicoleYou don't know me but I've kept up with a Kati & her son Seamus and she asked us to pray for Evie. I've read your journals and let me tell you that I know EXACTLY how you both feel. My husband and I were in a similiar situation last year late december. My baby girl has HLHS and went into cardiac failure and was on ECMO... But let me tell you this I truly believe that if it weren't for our faith and knowing that GOD is in control Isabel wouldn't be here today. She turned a year in August, Praise God!! So please as hard as it is, keep the faith and just know in your heart that God is able!!! I will be praying all day and the days to come. Blessings to you both And lil Evie.

The Lord is doing a great and terrible work in you through this. It's nothing that you would EVER sign up for, but it is a gift. You are walking through fire and will have understanding and experience that will enrich who you will always be from hereonin. A terrible gift. But a gift. (Not much comfort for now though!)Watching and praying with you,Rebecca Crow

Now to Him who is able to do immeasurably more than all we ask or imagine.....Eph. 3:20

Persistence in prayer on our part is done not in desperation toward a stingy or deceptive God, but in hopeful anticipation that our heavenly Father knows our needs and will generously provide the best for His children.

MATT AND NICOLE, YOU DON'T KNOW ME BUT WE ARE IN A GROUP WITH KATI AND SEAMUS AND SHE HAS SENT US YOU DAUGHTER WEBSITE, I HAVE READ IT AND MY PRAYERS ARE WITH YOU AND YOUR DAUGHTER EVIE. MY SON LIAM HAS HLHS AND HAD HIS FIRST SURGERY ON SEPTEMBER 28TH 4 DAYS AFTER HE WAS BORN, I KNOW EXACTLY HOW YOU FELT DURING THE NICU STAY AND SURGERY. JUST KNOW THAT GOD IS WITH EVIE EVEN THOUGH YOUR FAITH SEEMS TO FADING, BUT GOD IS WITH HER AND WITH YOU ALSO.MY PRAYERS ARE WITH YOU ALWAYSSARAH LOCKHART

Matt, Nicole, Norma & family... The Women Ministries prayer chain from the East Coast Conference is holding little Evie and all of you up to the Lord. He performs miracles.--I know that for a FACT. Hold onto Him!! Terry Marks Livingston, NJ

We haven't met. My daughter Ramona (born 11-26-06) is a patient at Children's and I heard about your little Evie through Kati Murphy.

My daughter was also diagnosed after birth and I can identify with the shock and grief I hear in your entries. We too were told many times that she might not survive and discussed hospice very seriously on three occasions.

Ramona just celebrated her first birthday. She is happy, she's spent a total of just 5 weeks in the hospital. She is developing normally for the most part.

I will be praying for your little girl. Praying for her recovery and praying also that the two of you will feel peace about any upcoming decisions you have to make regarding her care. You are her parents and the deep love and concern you feel for her will help God guide you in your new roles as caregivers.

Prayers for you from another family with a child with a heart defect...know that you are not alone as you wait...there are many standing behind you with prayers to our Heavenly Father. May He give you all strength in days ahead!

hi, i am a friend of kati and seamus and bruce murphy, and they sent us your way. i am a cardiology nurse, too, and i understand the waiting is very hard, but i know you can make it, because you are surrounded by so much love.many prayers your way!!!

Matt and Nicole-I just heard. I'm so sorry. Adrienne just called me. My heart aches for you. I wish there were something that I could say or do to help but I know there's not. I offer you my love and support and a shoulder to lean upon if you need it.

A prayer request for Evie came through the East Coast Covenant women prayer list. I have been praying for Evie ever since. I sent it on through my church and friends. Then I find out that Seamus who we have been praying for this whole year is in the same hospital. May the Lord heal both these beautiful babies. Tracy Wyman

Matt and Nicole. Please know my deepest prayers r with you. I have read Evie's blog, and I have fallen in love with a beautiful baby girl. I wish u all the best and keep up your faith, even tho it is hard to do at this time, God will bring u all through this and you will be more stronger than before. God is watching and has his arms wrapped around Evie.

Jake and I have been following Evie's blog and praying each day. I cannot even imagine all of the emotions you are feeling. Know that you are in our thoughts and prayers. I especially pray that you are able to feel and be carried by the comfort and love that only God can bring. Peace to you, my friends. Joy and Jake Alsop

Nicole and Matt - I am so sorry. You gave Evie life, which she is now experiencing in the presence of God. You are also walking the hardest path a man and woman can walk. I wish I could say something to help. Marge

Dear Nicole and Matt,I hope you remember me, I'm Adrienne's aunt Claudia from NY, and you stayed at our house one summer. I've been following your sad plight, and have been praying for Evie, and my heart goes out for you and Matt too. You both have within you the wisdom, and courage to endure this bumpy road your on. I know the minutes must seem like hours, but keep the faith Evie is in Gods hands! Have peace in the knowledge that God loves, and cares for all His children, and only God can perform miracles...and He does!I have sent a letter out to my family, and friends up, and down the eastern coast...we're praying for you all!!Always in my thoughtsWith Love,Claudia,Ally, and Will Muller

Matt and Nicole,You and Evie have been in my prayers. I continue to hold you up in these days of grief and sorrow. I am so sorry. May God's strength hold you and love you and continue to give you hope. One day, in the very presence of Jesus, you will see Evie again. Christie Van Zee